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Adenomyosis anyone ? Adenomyosis anyone ?

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Unread 02-17-2009, 12:26 PM
Adenomyosis anyone ?

Hi i have Adenomyosis severe and suffer daily stomach cramps and hip and back pains,sometimes pain radiates under ribcage and causes severe pain when passing stool. Had a laporoscopy five weeks ago and no endo or ovarian problems found just bulky uterus due to adenomyosis found earlier by TVS and MRI scan. Do any of you ladies share the same problem and symptoms ? Doctor said a hysterectomy is the only option after trying Mirena coil e,c,t. Have anyone had a hysterectomy for this condition only to find out it was cancer after pathology,im really scared ?
Many thanks love Marie x
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Unread 02-17-2009, 10:38 PM
Adenomyosis anyone ?

We have had several threads here on the site discussing adenomyosis so you might want to use the search tab to find and read those threads. Many ladies here on the site have had a hysterectomy for adeno, however I can't remember if any of them had cancer issues come up with pathology. Have you asked your doctor about the risks of cancer in your situation?

Before scheduling surgery you may want to consider at least a second opinion to be sure that a hysterectomy is the right and best option for you. You can also read through our many Adenomyosis Resources for more information.

It is okay to be scared about this major surgery, many women are! You are not alone at all! It is a big surgery and a big decision! The key is to do your research and weigh your specific pros and cons!

Sending lots of s your way!
Unread 02-18-2009, 02:19 AM
Adenomyosis anyone ?

Hi there thank you so much for your reply and support !
I will search the forum for the Adenomyosis thread.
Take care love Marie x
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Unread 02-18-2009, 09:08 AM
Adenomyosis anyone ?

Hi Marie
Is there a reason why you fear pathology will come back as cancer? Have you had abnormal test results?
I had LAVH on 1/5/09 due to adenomyosis. Prior to that I had a lap with ovarian cyst and endometriosis removal in Nov 08. I also was diagnosed prior to hysterectomy based upon enlarged, tender uterus with heavy painful periods. Pelvic MRI and transvaginal US also supported the diagnosis. Pathology came back (+) adenomyosis and cervicitis with a cyst in the cervix.
Prior to surgery my symptoms were contraction like cramping, back, hip, groin pain, fatigue ect. By the last month the pain was constant and severe despite narcotics.
Now 6 weeks post-op I'm still slowly recovering and unfortunately being treated for chronic pain but I feel better than I have in a year. A couple of days last week better than I have in a few years.
Initially I did not want a hysterectomy but I am very happy I made the decision to have one.
Good luck with everything and look for previous threads on Adenomyosis.
Unread 02-18-2009, 10:20 AM
Adenomyosis anyone ?

I had an LSH two weeks ago for adenomyosis. Within less than a week, I felt better than I did before the surgery. Before the hysterectomy, I had stabbing pains, cramping bloating and a "heavy" feeling all of the time. Also clotting and longer periods. I was always concerned about cancer because when you read the symptoms of ovarian cancer, they seem similar (the feeling of being full). I had a biopsy and it was negative. The decision to have surgery is not to be taken lightly, but once all options are explored and you can no longer handle the pain and symptoms, you will know what to do. Also, read all of the threads, as I did, they are REALLY helpful. Good Luck.
Unread 02-19-2009, 02:32 AM
Adenomyosis anyone ?

Hi Hope,
Yes i fear for pathology as my CA125 levels are 130 should be under 35 !! They have done all the tests but nothing but Adenomyosis found. I know it can raise with Adenomyosis but this high i'm not to sure ?
Love Marie xx
Unread 02-19-2009, 06:44 AM
Adenomyosis anyone ?

Hi Marie
From what I have read (sorry can't remember the source) the CA125 is an indicator but non-specific including the number. Have you seen a gyn-oncologist? Hang in there can keep researching your options, you'll know when you have decided what is best for you.
Unread 02-19-2009, 07:25 AM
Adenomyosis anyone ?

My Dr. refused to do a CA125 test on me because of the false positives. He said certain non cancerous conditions almost always raise the numbers.
Unread 02-19-2009, 10:40 AM
Adenomyosis anyone ?

I have all the same syptoms as every one else. The doctor believes that mine is adenomyosis but won't know for sure until path report after the hysterectomy. I go in for surgery Monday. I will have LAVH with possible BSO but he said if he can leave the right ovary he will. I am so done with all the cramping, pains everywhere and spotting between AWFUL clotty periods. I am looking forward to having the surgery just a little scared about HRT.
Unread 02-19-2009, 11:14 AM
Adenomyosis anyone ?

Originally Posted by von beatnik
Hi there thank you so much for your reply and support !
I will search the forum for the Adenomyosis thread.
Take care love Marie x

I recently had hyster for adenomyosis, 2nd week post op and so far so good. Good luck with your care. I had a lot of pain previous to surgery, which they too thought was the adenomyosis.

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